Managing symptoms for a �good death�

[NRSKarenRN]

found at nursing 2006:

november 2006

volume 36 number 11

pages 58 - 63

managing symptoms for a "good death"

marylou kouch aprn, bc, msn

contact hours: 2.5* expires: 11/30/2008

What's a good death? Most patients facing the end of life say it means freedom from pain and other distressing symptoms. 1 as nurses, we can play a major role in easing their way to a good death.

Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.

In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.

[req_read]

finn…

It would be interesting to attend your death. I suspect it would be one that would make the attendees feel good… which, by the way, is how I would classify or define “good death.” If the one doing the dying can cause those around him/her to feel uplifted, then that is a “good death.” It is rare, but it happens.

So you have a bit of the rebel in you aye? I don’t know if that would be common among hospice nurses or not. I have it in my character too… but then I’m weird. I eat dessert before dinner and yank electric plugs out by the cord.

My great-grandfather was an abusive alcoholic. Great grandma would hide the kids in the closet when she saw him coming home so that he could only beat her and not all the children too. He finally committed suicide. The succeeding couple of generations concluded that if they just didn’t drink… voila!... the disease was cured. What they failed to understand was, they had the disease too. They passed it on intact, but with different drugs of choice.

Among 12-steppers, alcoholics and drug addicts are recognized as the lucky ones… because their drug of choice is undeniably problematic. Many, if not most, “addicts” use a drug of choice that is not recognized by the public for what it is. “Work” is one example. “Religion” is another. People addicted to these things are admired… yet they have the same disease. Addiction is endemic in our society.

When writing about it I have made a distinction between full-blown addiction and the lesser, sort of sub-clinical variety (which I call “parachutes” instead of out-and-out “addictions.”) When I would go into a dying patient’s family system I immediately started looking for who was addicted to what and whether they were full-blown addictions or merely parachutes. Once I figured that out I could tailor my care plan.

But all of that is water over the dam. Now we have a one-size-fits-all care plan. Oh I know… there are little backwater areas out there where a weirdo or two practice nursing in the old way, but that is becoming increasingly rare. There’s no money in it. Which is why so many nurses leave nursing. There is no shortage of nurses, only a shortage of practicing nurses. Even my wife is thinking seriously of joining the latter group; i.e. non-practicing nurses.

Speaking of my father…

Who the heck mentioned my father?

Well, I’m weird, so I can say what I want.

When my brother & I discuss our father and uncover a new character flaw that we were unaware of previously, it’s like, “Oh God! Not another one!” Because we both realize that whatever we find in him we then must immediately start looking for in ourselves. If he had it, then we must too… in some form or another. It might be a variant of some sort, perhaps even a contrary manifestation… but if we grew up with it, chances are we have it too.

And we can’t fix them all… even if we can identify them (the character flaws) it finally comes down to just trying to love one’s self in spite of it all… to accept one’s self, warts and all. In that way we take one more small step in the direction of understanding “unconditional love.” Loving ‘me’ would have to be pretty darned unconditional.

But I’m trying. And as you say finn, the healing is in the journey… in the trying.

Michael

[finn11707]

(Michael) So you think I'll have a good death? Reassuring to hear! I have already prepped my kids--taken them to the ocean, cliff side spot where I want them to release my ashes. My youngest was appalled at the whole topic at first; then gleefully threw handfuls of dirt to the wind "to practice" by the end of the day. My son expressed personal angst associated with his attachment to eastern philosophy and conscious transition to the next life--learned in India, but not yet meshed with western philosophy. I guided him "yes you do need to give the meds if I need help with symptom management..."; but "no, don't just put me to sleep..." I may still have a little work to do..

Not that I am planning a departure any time soon, but I want my kids and myself to be ready so it can be good.

I have self reflected about possible familial, inherited addictive behavior-- if this or that is a sign of addiction in me. Even if my antennae wiggles as a signal that 'maybe' I am...I give it up. I am uncomfortable with the idea of addictive patterns in myself; but also recognize it as a common, driving part of people which is not always destructive. For myself, I am addicted to a few good things. Perhaps a bit of rebelliousness. But I am trying to give up 'control' ---that is definitely a self destructive addiction! But that rebel is certainly what brought me to where I am now; and is the reason I am so committed to myself and others about having the right and getting the respect for each individual's right to choose how they live and how they die.

"When I would go into a dying patient's family system I immediately started looking for who was addicted to what and whether they were full-blown addictions or merely parachutes. Once I figured that out I could tailor my care plan"

Can you tell me more about this style of care planning (Michael). I am fascinated by the idea. I don't use the family systems model as much as I perhaps should. I always have felt hospice nurses (and their patients) would benefit tremendously by requiring dual degrees (nursing and MSW) by staff who do this work. I actually thought (for about a minute) about doing this myself. But really wish we had more available training which would support nurses toward a greater understanding of the psychology of dying---Like yours---have you thought about offering nursing ceu conferences to train Hospice nurses? When push comes to shove, and more and more dollars are cut from hospice budgets, we all really need to know our stuff and be comfortable in going there with patients...Or maybe we could just up the PRN doses a bit instead...

[req_read]

My wife & I have to go up to Sarasota and will be gone all day, so more later.

Quickly…

Studying the patient’s family system let’s you know who plays what roles in the family; e.g. who is in charge (who you should focus on and can get the others to go along with the program), who will need the most follow-up afterwards, and of course, how the patient is likely to deal (or not deal) with his/her own dying process.

Later,

Michael

[req_read]

Some of family systems is pretty basic… the kind of thing a person would tend to do naturally… given the time that is.

For example; my sister’s role has always been “little sweet.” If, as a nurse, you wanted to get my dad to do something he was not inclined to do, you could always call “little sweet” to lend her support and then he would be far more likely to comply. However, a deeper study of family systems theory would reveal that “little sweet” is a common role. It has identifiable characteristics and predictable consequences… most of which are not good. For example; it breeds resentment among the other siblings, not to mention the wife. The wife is supposed to be the apple of dad’s eye, not a daughter. So how might that affect the relationships within the family system? How might it affect the way the family relates to dad when he is slipping deeper into dementia in a nursing home? Indeed, how might his family history and the nature of his relationships have contributed to his dementia in the first place? And then of course, what would all of this tell you about how his dying process would likely play out? Would he be more or less likely to linger for example? Does the wince on his face mean he is in physical pain or emotional pain? And what would you propose to do about it? And finally, what would all of this suggest that you, personally, might want to consider changing in your own life?

Maybe nothing… I don’t know. Maybe it’s better not to know. Like my brother says, life isn’t fair… you have to choose the harder path to have the better, long-term outcome.

In the case of my wife Becky and her dying Aunt Kay, a little investigation would have revealed that Becky was the only family member active in providing care, but that she and her Aunt had a close relationship, that Becky is a nurse and filled that role in Kay’s life, was her power of attorney and last but not least, was her advocate. That would tell you, as a nurse, that you could not pull the wool over Becky’s eyes and that you had better listen to what she said. It would also tell you that she would be the primary one to receive bereavement follow-up after the death. However, they did not ask Becky what her phone number was, what she does for a living or even where she lived… which clears the way to side-step the regulations regarding bereavement follow-up… they can just write “Unable to contact,” on the chart and voila! the regulations are satisfied.

They are lucky I wasn’t there. You see, Becky does not like to make waves… like most nurses I should add. Nurses take it and take it and take it and then just quietly leave. Bingo! Nursing shortage. But they won’t fight. Which is odd in my wife’s case. I mean, she will kick my behind up and down the street all day long. I would have thoroughly enjoyed seeing her do the same to that hospice doc (you know, the one who ordered morphine for Aunt Kay after she told him she didn’t tolerate it well.)

Then, when Aunt Kay did not tolerate morphine well and Becky called the on-call nurse the usual scene was played out (I’ve seen it ten thousand times before.) The nurse went through the motions of calling the doc who refused to make a change and then the nurse tried pulling the wool over Becky’s eyes with the classic line, “Well, it IS the drug of choice.”

Now think about it. Here we have a nurse (who may very well sympathize with the client) BSing the client while being totally unaware that the client is probably more familiar with what is going on than she is, and all in the effort to avoid fighting with the doc. Sound familiar?

I have been there many times myself, but I am not proud of it. After all was said & done I wanted to at least write a letter to someone… either on the hospice’s board or to a State Regulatory agency… but you guessed it… “Don’t make waves!” So I try to be obedient.

But at least I can vent here.

Michael

[finn11707]

Yes, I am well familiar with the dynamics you describe. Seems to me there is a 'don't make waves' mentality in the nursing culture in general. Not just to avoid fighting with the doctor, but also nurse to nurse, msw to nurse, etc. Family dynamics are sometimes difficult to figure out and work with effectively...but then you have to knock heads with the Hospice team who is intended to support the front line, but pulls back instead with that 'don't rock the boat' mindset. There are recently several 'loud voices' in our hospice team meetings! It definitely is rocking the boat and making the office a sometimes uncomfortable place to be. But we are getting somewhere. There was a time when I was the only nurse raising my voice (along with one of our MSWs) regarding some very insupportive and ineffective management attitude, ie cutting off, shutting down discussions regarding difficult patient/family situations; condoning inexperienced staff's under management and inattentiveness to glaring problems, which often resulted in crisis. It didn't go far initially, except to get me talked to about "tone it down a little...go with the flow"...then something happened. Three days after I had spoken out strongly in team about inadequate services and team focus on a particular patient the patient suicided. In that meeting, the managers had been particularly dismissive--to the point of rudeness to me, with staff later coming forward with statements of support to me. Now, MSWs, RNs, Chaplains are all speaking up! Management IS listening because they have been directed to from above. No one is saying 'we should have listened...done this differently', but there is a change in tone in the meetings, added inservices which, when too topical, staff are speaking up and honing in on specific needs and concerns. For instance. We received an inservice from the 'debrief therapist' for our organization. The topic was on recognizing signs of suicidal intention in hospice patients. (not on how to support them) The therapist gave general stats on suicide and admitted to no experience with hospice patients. Further commenting that no studies have been done to direct hospice workers. MSWs asked the presenter for more training inservices (I am not sure why as she admitted she does not have the base of knowledge or experience that would specifically help in our hospice setting) and they will receive it per management's consent. Nurses present asked for further education but were told the MSWs are the 'appropriate' staff to address these concerns with patient/families. In the RN casemanager meeting later that day, nurses strongly voiced concerns about what had happened again in this meeting (you would have been proud Michael!) Noting that, again, nurses were told to stay out of it 'let the MSWs address it'. Speaking to the history of our unit where nurses are often the only ones in the home addressing the issues, with MSWs loaded to the point of being unable to visit more than 1x per month. By the end of the meeting, there was indentification of a psychiatric nurse specialist who is also a hospice nurse--in a nearby community. She will be asked to inservice our nurses. Hooray! one for us!

Do I think that this change of tone in our hospice will result in a cultural shift? I don't know, but I hope so. I hear, often, among our nurses 'there is only so much energy for this work...if it is used to fight with management, then it is not available to address patient and family needs'.

"What you don't know can't hurt you"..."don't rock the boat"..."that's not your focus"..."it's a process, sometimes requiring that the crisis be allowed to evolve before the patient/family is willing to work with us" ---all crock statements, used to contain and avoid our involvement...whether for budget, time management, emotions, or our lack of knowledge and committment.

Michael, thank you for the additional info and examples of family systems dynamics as it affects our work. I hate to admit it, but in our agency--"little sweet" would have been seen as not needing bereavement services because she was so 'strong and present'. Sure, she would get the standard mailings at intervals, but not the immediate follow up even support calls. This is because, in our agency, our MSWs are the ones who call it, and also do the early bereavement work if it is deemed necessary. They likely have only seen the patient a time or two. When the nurse adds input after a patient dies--even if the nurse states it was a very difficult journey for patient or family, her input is dismissed. But that is a fight for another day...

[req_read]

finn…

That sounds great! It’s good to hear about nurses advocating for better pt care and working conditions. And yes, it is hard to pour energy into fighting for these things when you’re already exhausted from dealing with the pt/fams.

It does sound like your management team (which I presume is representative of other hospices) presses the nurses to stay out of family issues; i.e. “That is for the MSW,” all the while knowing there are not enough MSW’s to go around. It is a little reminiscent of not asking family members what their phone number is or where they’re from, thereby insuring they cannot be contacted afterwards.

There will always be a dynamic point of contention between the business team wanting to make the operation financially efficient versus the care providing team wanting to provide good care. Their goals are diametrically opposed… which, I think, goes back to the original article that kicked this thread off.

The author sounded more like a management person; i.e. how to achieve basic symptom control as quickly as possible… largely by managing meds. Even when the pt expressed concern (was “depressed”) about the actual physical process of dying the nurse sent in an MSW. In other words, she was the manager deciding who needed to do what. She did not seem to see herself as a provider of care, but more as the manager directing those who did.

I suspect hospice managers promote this model; i.e. the nurse manages meds and other people… but doesn’t really get involved herself… is not really committed. I remember a line from an old TV show: When you have bacon & eggs for breakfast, the chicken was “involved,” but the pig was “committed.”

Which is fine I suppose… although that kind of nursing would not interest me personally. I’m sure it appeals to many though. Still, it sticks in my craw that the author of the article sent an MSW to speak with the pt about actual, physical dying… what that would be like. That is like asking your hairdresser how to repair your car.

Which brings up another point relevant to achieving “good death,” and one seldom addressed. And that is- What disease processes yield what dying processes. For example, how would dying from COPD compare to dying of hypovolemia? And this is a particularly touchy subject because it nearly always involves time.

Because of my years of nursing in Med-Surg, ER and ICU and had a pretty good idea about this kind of thing. I also noticed that docs never told pt/fams anything about it. Like I said, it’s touchy because of the time factor. In other words, the severe COPDer with a bleeding ulcer could die today of hypovolemia… painlessly, quietly, just sort of drift off. Or he could have surgery, go on a ventilator and never get off… dying 2 months later… painfully, fretfully awfully.

An acquaintance of mine (friend of a friend) just died of lung Ca with bone mets last week. He could have died 2 months ago of sepsis (the operative mechanism being hypovolemia) and just sort of drifted off. I mentioned this to my friend at the time but he thought I was nuts. Then when he called a couple of days ago to tell me his friend had finally died, he also explained to me how awful it was.

So here’s the point… I have noticed over the years… just an observation… that death tends to be benevolent… until you start messing with it… and then it can get ugly. Which had a lot to do with why I went into hospice. I was tired of rendering the inevitable more ugly. But the trade-off… the price to pay… is time.

I have mentioned by wife is an oncology nurse. To a large degree, what oncology does is- buy time. But almost never do docs or nurses explain to pt/fams differences in how actual, physical death is likely to occur… and very seldom to pt/fams consider what they will do with that time. We don’t say to pt/fams, “This will buy you some time. The real question is, what do you plan to do with it?”

Time and time again we see pt/fams suffering terribly to buy time… when they have absolutely no idea what they wanted it for in the first place.

Aunt Kay died as easily as she did largely because she opted for benevolent death now… as opposed to a hard death with some extra time.

Then again, I believe it was one of England’s Queens to said, on her deathbed, that she would willingly trade her kingdom for a little time.

Which raises some interesting questions; e.g. How will I react when I am at that point? “Good death” now? Or not so good death plus some extra time? And of course, if time is so valuable, what am I doing with it now? It’s cheap at the moment, but what about when the price for just a little more is misery?

Michael

[finn11707]

i like the term 'benevolent death'. i know what you mean about dying often being uglier when we do things that delay the natural course...but there are so many patients and families who come to hospice so unprepared to accept the natural course. they need time to develop relationship and trust in hospice philosophy and support. we do all we can to teach about progression of disease and symptoms/management at the end, while attempting to assuage fears. sometimes things are progressing so quickly that much of nursing focus is on symptom management and that is all family and patient wants from the nurse in that moment...anxieties levels are high--patient's, family's and ours; and we call for the social worker and chaplain to 'get in there quick' to help with hearing the reality. those are instances that benefit from having visits separated into a 'nurse part' and a msw/chaplain part. that is, if all team members are able to go there...

i recall a young woman who i cared for. she loved life dearly, but was losing her battle with stomach cancer. her mom was her caregiver and a retired med/surg, icu nurse. we were chasing symptoms--partly because one of her great loves in life was good food. she ate all her favorites though she vomited like mad with eating. mom could not accept the explained benefits of the natural dehydration process to control some of her symptoms. the hospice team listened carefully to the dilemma and heard! they actually authorized mom to give small boluses of hydration fluids when she felt it was 'needed'. and also ordered octreatide doses to decrease gi fluids. near the end, a friend who was a shaman visited. he performed a clearing ceremony and a healing ritual and gave her brewed herbs to drink which removed much of her acites and lower extremity edema. he improved her comfort more than we had.

yes, her death was harder than it could have been. but we had listened carefully! supporting patient's and mom's wishes. mom had been allowed to offer what she firmly believed was important to both support her daughter and ease her daughter's suffering. after it was through, everyone felt at peace with the supportive interventions and with their part. the bereavement process included early intervention from the msw, the chaplain and the nurse. we all needed it.

we can use all our expertise and knowledge...as long as we honor where the patient and family are...

"isn't it plain the sheets of moss, except that

they have no tongues, could lecture

all day if they wanted about

spiritual patience? isn't it clear

the black oaks along the path are standing

as though they were the most fragile flowers?

every morning i walk like this around

the pond, thinking: if the doors of my heart

ever close, i am as good as dead..."

excerpt of landscape by mary oliver

[req_read]

finn…

Yes… honor where the pt/fam are. But if there is a price to be paid, let them know what that price is likely to be beforehand; e.g. you can eat this favorite food, but the price will be nausea and vomiting. You (the pt) decide… we will support you either way. But to make an ‘informed choice,’ the pt has to have good information up front. If the pt says, “I want time,” you respond, “Okay, we can give you time. And here is the price of purchasing that time.” The price might be receiving chemo & radiation with all that entails, it might involve becoming less independent and having to endure that. But we should be frank… brutally honest… “Yes, you can have what you want, but here is the price.”

Very often, when a dying person says they want more time it is sort of an excuse; e.g. they may say they want the time to see Georgie graduate, but what is really behind that statement is they are afraid to die. I have found that understanding death… what it actually is or is not… makes people less afraid to embrace it. That is the nature of my work; i.e. helping people to understand what death is… and is not.

When people have a better understanding of what death is, they are more likely to embrace it and move on. They die sooner… easier.

We often hear it said, “Ol’ so-n-so was a fighter by golly. He never gave up.”

Which is sort of like saying, “When my brother in law got arrested for drunk driving he fought those cops every inch of the way. He sure is a tough old cob!”

Well, I guess. He’s also pretty much of an idiot. Tough? Maybe. Stupid? Definitely.

Dying is normal, natural and beneficial. It teaches us who we are… which is the whole point; i.e. learning who we are. Death is not, “end of life.” Death is, “learning who we are.”

When people understand what death is… and is not… they are far more likely to embrace it and move on… to have a “good death.”

Michael

[finn11707]

sometimes it is so difficult to cut through the crap with patients and families. it feels awful to see them avoiding the important stuff of dealing with the real fears and grief by arguing through the days...

i am there now with a patient and family. i come home drained. funny, it is often the most educated and brightest people who are the most angry. any tips for changing the tone? i have done all the things that usually work...now i am running out of ideas and energy.

i always believed that if the sh-- runs deep, at least we can engage in discussion and celebration of what has been meaningful in their life. these are the ones that definitely help to remember it is a job.

"i have found that understanding death... what it actually is or is not... makes people less afraid to embrace it. that is the nature of my work; i.e. helping people to understand what death is... and is not."

michael- i know there is fear behind the avoidance tactics some people use. what do you find to be effective in breaking through so there can be peace?

[req_read]

finn…

Here’s the sad truth… lots of people are simply incapable of learning… and as you suggest, it is often the more educated and supposedly brighter people.

This seems like such a paradox, but go deeper. The answer may not be so mysterious after all.

The terms “bright” and “educated” are often thought to at least be related, if not synonymous… but they really aren’t. Yesterday I was talking with a lawyer about setting up POA for healthcare decisions. If I die first, my wife is my POA & advocate… and visa versa. However, the one left is in deep, deep doo-doo. When I asked the lawyer how he would make healthcare decisions he said he would leave it up to the docs! YIKES!!!!!!!!!! I tried to explain some basic principles of what “no extraordinary measures” actually means in the real world and it was like trying to talk to a rock.

The lawyer is educated, true enough… but “bright?” Hardly. “Educated” people are, very often, some of the most simple-minded, concrete thinkers around. They memorize a ton of data & can spit it out on demand… but actually think? Not their forte.

Who I finally decided on to be my POA for healthcare (if my wife can’t be) is one of my neighbors back in Albuquerque. He’s a little younger than my son so is likely to out live me. He’s Hispanic, born & raised on the bad side of town (surrounded by gangs etc.), has been stabbed a few times and is a foreman in a company that lays fiber optic cable and sets up computer networks, mostly for schools and the government. He is not what we would normally call “well educated” nor “intellectual.” BUT… he can think. And he can be trusted to honor my wishes far more than a doctor or lawyer.

Some people are too sick to be helped. That may be the case with the pt/fam of which you speak. It may be that all you can do is sit back and watch… staying out of the way and out of the fray. However, the one thing that hospice nurses have is an ally… and that ally is death. Death don’t take no crap off nobody. They can fight every inch of the way, but death will herd them in a predictable direction regardless… and it just may be that at some point they will break… at some point it may finally occur to them they can’t win this fight… at which time you can jump in. In the meantime it may be best to just let them duke it out.

Dying is an accelerated learning process. How can you teach anything new to someone who is convinced he already knows everything?

Answer: You can’t.

So you might have to wait until it occurs to them they might not know everything after all.

It’s like training (round penning) a horse. You have them work and work until they accidentally stumble onto the response you want, then you reward them. Until then, death will keep them working.

Michael

[req_read]

PS…

“Intellectualizing” (and I don’t mean that in a good way) everything can be an addiction… a true addiction. It gives a false sense of control… which is often reinforced by society. These people are good at what they do, often wealthy, often admired and looked up to. They suffer from a profound sense of “better than,” which is also reinforced by society. In actuality they may be under-the-bridge addicts… but with not the slightest clue in the world.

Then along comes death… which teaches us how to live… or not.

finn… think of your client as a hopeless addict. How would you deal with a hopeless addict?

Michael

[finn11707]

thank you michael--that is very helpful ...framing of intellectualizing control as an addiction. yes, it must be a hard journey for those who have led an intellectualized and catered lifestyle. death is a hard lesson in life--one you can't intellectualize your way out of. even being catered to can't make it easier, i guess. the irony is the dying person truly holds the power over all the rest of the family don't they? that is why it can be so crazy making with all the vying for power trying to 'lead' the dying process...

say the intellectual argues to the last day. then the approach of death dawns and there is a brief moment of surrender...willingness to hear. what words would you offer?

a fiber optic cable guy formerly from the bad side of town! wow! that's brave. how did you determine he is the best choice for you? "but, he can think..." leaves a lot out. i imagine he would perhaps be tough enough to stand up to any opposition to your stated wishes (if there were any) and, as your neighbor, you may have been able to get to know his character... do you plan to work with him? i often wonder if that happens. sometimes we get into the process with hospice patients and check in with the dpahc and it is a big '???' with deference to the doctor or pushy relatives.

dying is so important...wouldn't you rather choose a trusted, savy hospice worker?